Last reply 1 year ago
NO MORE MS

Hi all I know they say you can’t get rid of MS but I did. I haf HSCT… stem cell chemotherapy treatment in Russia last year and I no longer have any symptoms and mt EDSS went from 2.5 to 0.

I am not bragging but want to help others achieve the same results. I had MS for 12 years and now I am on no medication at all.

It’s a harsh treatment but it works.

Wishing you all the very best

From Cathy .

I have a blog called Cathy’s MS Cure on Facebook

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stumbler
1 year ago

Hi @cathysmscure and welcome.

Your story sounds awesome. If only this was made generally available, rather than having to travel halfway around the world………….


merfield
1 year ago

I agree with @stumbler. And what happens if there’s a problem? Which hopefully, there isn’t/won’t be. But good for you. It’s good to hear a success story. Xx


matic91
1 year ago

Wow that is amazingly astonishing 😀 how came you to this idea? Furthermore i wish you all the luck. 🙂


cathysmscure
1 year ago

Quite a few countries do it… even Australia but we are in trial stages.
I wasn’t able to get the treatment here as I had had ms for 12 years and considered to be to well… crazy.

I saw a program in Australia… 60 minutes and I went from there.

The treatment is called HSCT. There is a 2 year waiting list for Russia and people from all around the world are getting it done.

You can’t put a price on your health.

The hospital in Russia is extremely clean and some of the staff speak English.
Yes I had a major hiccup when I got home but I have overcome that.

I am not trying to push this treatment but a lot of people don’t know about it as the drug companies block it… I just want to be able to help others with ms be aware that there are other options that work too and give you back your life.


arknat
1 year ago

@cathysmscure,

First off, congrats on getting rid of this MS curse. Good luck on moving ahead with rest of your life w/o MS.

From your original post, why would you say its a harsh treatment ? Is it because of side effects or a general discomfort relating to HSCT.

thanks.


vasy
1 year ago

Hi @cathysmscure

Glad you’re improved.
Are you talking about Pirogov clinic? Who was your doctor there?


darren
1 year ago

Money+2YearWait=Cure


cathysmscure
1 year ago

Hi guys.. it was at the pirogov clinic and I had the best doctor in the world leading this treatment. His name was Dr Federenko.

It is a very invasive treatment
1. They removed your stem cells
2. Hit you with 6 months cheom in 4 days
3. Put your stem cells back in.

Sounds easy but you need to have a strong mind.
It’s very full on but so worth it.
I am no longer tired, I have my balance back and I have energy again.

I saw people go in with walking sticks and not needing them at the end.

Lots of blogs to follow on Facebook of others who were there with me.
Cat’s hsct journey
Lets get rid by alex green.

It does cost a lot of money but so worth is. I can enjoy life again with my husband and daughter.


spunky
1 year ago

@cathysmscure
Can you describe your set back? What makes the treatment harsh? Is it painful?

So happy to hear your great news!


daniel2025
1 year ago

It’s a pipe dream for most it says on the ms society page its can’t do anything for already damaged nerves. It also doesn’t say anything about it been a cure for ms.

While it may be working for you I would never say it’s a cure as 1. It doesn’t fix everything that ms causes and 2. No where on the page does it say it’s a cure.

For ms to be cured they would need to know exactly what causes ms in the first place and secondly it would need to be able to fix all issues which it does not.

The page don’t offer any guarantees you so called new immune system won’t start attacking the nerves again. While I hope you stay in good health I just don’t buy it as a outright cure which is what it comes across as you saying.

If it was a outright cure there would be no need for this forum and people will be queuing outside the door for miles and miles for days on end.

With all the facts in mind it’s unaffordable to the majority of people and to risky for most in my opinion.

https://www.mssociety.org.uk/hsct


potter
1 year ago

How long were you confined in your home to avoid the germs outside. I e-mail back and forth with a young potter that had they same treatment for cancer and spent almost three years inside. He just now got permission to go out into the world. Potter


cathysmscure
1 year ago

I am on this forum to help others… yes it is a cure. I am on no more meds… my EDSS is now 0.

My numbness has gone and balance is back.
I was really sick prior to this treatment.

People are queuing out the door…. you try and get in tomorrow… good luck with that.

There is at least a 2 year waiting list.

I did not isolated from others


vasy
1 year ago

Hi @cathysmscure
don’t want to upset you, but there is local Russian group in social network Vkontakte for Pirogov’s HSCT ex-patients, where plenty of people claim they started to progress in some years after HSCT.
So certainly this is not a cure for everyone, if it is cure at all.

Scientific papers say the same

I had a talk with Fedorenko and his colleague Melnichenko few years ago, and they appear to tend to create probably unrealistic positive expectations in their potential patients and understate the risks associated with their treatment. All this is completely understood as this is a pure commercial venture which is poorly (if at all) regulated by incredibly corrupt government bodies — so called “BIG BAD PHARMA” is regulated much-much more tightly and reside in probably less corrupt jurisdictions where some law actually take place and being enforced on them.
All this leads to the situation in which your doctor is actually a salesman in a commercial venture, and as a salesman he have to lie to you a lot.

I sincerely hope that this is not your case, and you actually been cured from MS
but I think this could be of help for others


tessa
1 year ago

[email protected]
The BBC reporter Caroline Wyatt went to Mexico for HSTC last year and wrote a really interesting and informative blog about her experience during the treatment.
She did not fulfil the criteria for treatment on the NHS in the UK.
She is back now but has given very few updates on her progress so I am assuming it hasnt yet proved to be the miracle she hoped for .
Good luck with your treatment though.
In my opinion no one can really make any predictions about the course of MS as it is so variable in different people.
I had a very severe episode of paralysis in 1965 …. no treatment available then. Recovered completely with no further evidence of any disease until 8 years ago when my walking started to deteriorate. So if I had had any treatment of any kind that would have been deemed to be the reason for my apparent “cure” . Of course that was not the case. My body somehow compensated of its own accord and as I have aged that axonal compensation has now declined.
Until they actually find what the cause of the condition is then in my opinion they are all working in the dark and that seems to me in increasingly obvious.

@cathymscure @daniel2025 @potter @tessa @vasy

HSCT is possibly a real solution/cure for MS and likely the most effective option out there but as Cathy mentions its not without risk. Dr Burt at Northwestern runs HSCT here in the US and the results are astonishingly good. While it seems expensive over a couple years it can be a lot less expensive then DMT’s which are needed every year. Some insurance in the US actually covers the proceedure. Regarding progression there is some debate on what is happening. Some say, your immune system again got MS just like your immune system got it the first time. So maybe you were cured, but then got it again. Others speculate the some residual still exists in the brain (which cant be fully removed via HSCT) and can continue to cause relapses but rarely. Finally the other fact is simply as we all age (MS or not) we progress to get worse. It is likely the case that with MS, brain reserves have been used up to a certain extent so even if you were cured you will still progress because everyone progresses with age.

Here is the interesting thing about HSCT that seems universally true: that fatigue that bothers most with MS seems to go away. My unprofessional conclusion is that fatigue is somehow the diease working in your body like when you have a fever. HSCT seems to get rid of that probably because the diease is gone. However, other symptons are a function of damage already having occurred and may get better only because of the brains ability to heal which now is no longer taxed with stopping new damage.

Anyway the first set of clinincal trials are actually starting to go and more data will become available. I honestly dont believe the pharma is blocking the procedure at all, its just there is little incentive for them to study or do any research on it. Without that, there arent many that want to take the risk. Once the results of the trials are in, I would expect many more insurance companies to pay for it. 80K a year for Tecfidera or a one time payment about 120K? Pharma maybe greedy for money, but I can tell you here in the US the insurance companies even more so. If they could save some money by going down the HSCT route they surely would. Right now what stops them is the unknown. Liability for pushing a procedure without enough data scares them more then saving some money. If there are real studies done, I am sure that will change.

I would definetly move in that direction if my wife’s condition becomes much worse, but for the moment she is pretty stable. Its either that or Ocrevus next. The main thing we would use to decide is another dtug that is on the horizon:

There is a company that I believe might have the actual cure. They are called Geneuro. They are doing a phase 2b study now and the results are going to be out in the next 3-6 months. Imagine no side effects and actually allowing for some remyelination. Here is their (obviouslly biased) point of view:

https://www.geneuro.com/data/documents/2017-04-Geneuro-Company-Presentation.pdf

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